Life-changing drug needed

With only two weeks of medication left, things are not looking good for Melissa Verleg.

Verleg has Cystic Fibrosis and has been taking the drug Orkambi, which she described as a life changer.

“It's amazing. I am able to do everything I want to do. I can be a mom again. I am able to lead a life without CF being at the forefront every moment,” she said. “I have no guarantee of any more coming. I have been trying and pleading. The government has not been calling me back.”

The drug is expensive, coming in at $250,000 a year and the government refuses to pay for it.

Verleg said she has just over two weeks worth of the drug left. She has applied for a compassion discount from the maker Vertex Pharmaceutical but was denied.

She has contacted the government several times and participated in a rally in Victoria last year with other CF patients who need the drug, but has not made any headway.

She has even tried to contact NDP Minister of Health Adrian Dix.

“We have had no progression on this in months. Adrian Dix will not even meet with us, our doctors, nothing,” said Verleg. “We have been told a couple time they will set up a meeting with us, but they have not done it yet. This has been going on for three months.

“I am very stressed. My kid keeps asking me how much I have left because he totally knows I am running out.”

Verleg is not only concerned about losing the benefits of the drug, but she has heard withdrawal from Orkambi can be very difficult.

Verleg said Vertex did offer the drug to the province at a lower price, but the exact price was not revealed.

Castanet has placed a call to the Ministry of Health regarding the matter.

A Gofundme page has also been set up to raise money to help Verleg purchase the drug.

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